Criticisms of DecodeME - and responses to the criticisms

[Amw66]

and just to add belt and braces to it, this from Table 1 of the RCPCH ‘Fabricated or Induced Illness by Carers: A practical guide for paediatricians’ – last published in 2009. Updated February 2021 - is wrong then?

Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly

 

[Maat]

Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly

Yes I remember that one well. The South West Paediatric Society and Crawley was to be the speaker. Didn't they apologize after a deluge of 'vexatious' complaints? . I noticed today that parents raising vexatious complaints to doctors is now an FII 'alerting sign' and that any one of the alerting signs triggers PP investigation. It's positively kafkaesque now.

Edit OMG - I've just another look at it.

 

[Kitty]

I’ve just noticed that the editor changed ME/CFS to ME in my letter. I understand the need for consistency but I would have preferred them to keep it as ME/CFS.

Wonder if it might be worth a brief email, if you have the energy? Just to say that the naming convention has changed, and it's be great if they could amend their style guide?

Might not work, but it's possible they changed it because they genuinely don't realise. To be fair, there's probably no reason they should know.

 

[rvallee]

One reason they have to argue this is that all their awful questionnaires keep identifying symptoms and consequences that aren't particular to depression or anxiety. Because they ask generic overlapping questions. Which is their fault in the first place for misusing those, but now they have to deal with the fact that there is no meaningful anxiety or depression in ME/CFS, while their questionnaires keep saying so.

Because their questionnaires are flawed. And they shouldn't be using them as if they mean what they claim it does. Which is the foundation of their ideology.

And it's not limited to psychosomatic ideologues, those flawed questionnaires are standard. So they are facing the reality that their entire constructs are meaningless, because the instruments and data they use to justify them are all flawed. This goes so much beyond just us, it reveals the near complete sham that is psychosomatic ideology. Once you remove all the invalid misdiagnoses, it's possible that there remains a small mass of people who do suffer from something like it, but at most it's many orders of magnitude than what it's been claimed, especially given the wildly inflated expansionist assertions about how "biopsychosocial disorders", however they want to call them, represent up to 1/3 of all medical consults.

 

[bobbler]

I never said ME is FND, its not as it doesn’t include motor or sensory features that would qualify. I have said that i think evidence points to it being a functional somatic syndrome

Can we have a permanent screen shot as well as a link for this?

 

[Yann04]

Can we have a permanent screen shot as well as a link for this?

https://nitter.net/AlanCarson15/status/1954467270748516811#m

Nitter link.

Edit: Archive Link as well

https://archive.ph/Aw5xK

 

[Tree]

Hi @Tree , thanks, and you. Better, following a 6 month crash after working on my 1st complaint to the DHSC on publication of the consultation responses at the end of last year. No screen time at all. Returned to my baseline severe about a month ago, then the Final Delivery Plan dropped. So here I am for round 2

Glad you got back to your baseline. That must have been very tough.

You are a beast, I am in awe of your vision and work. Hope the complaint will get a good response.